Sunday, May 31, 2009

We wanted to be home for church today because the graduates were being recognized. We have a graduate – Jessica has her BA in Liberal Studies. George also got to stand up and announce that our daughter, Jessica is engaged to be married to Luke Nickodemus. That was a fun moment for our church family. I did go home before we were dismissed – trying to avoid the whole germ thing.Valerie’s friend, Matt, (Jessica's Note: friend=boyfriend in our family) was here this weekend and we enjoyed his company greatly. He brought me up to speed on chromosome information.We also had a nice visit with Steve and Lois. I love Lois’ take on her cancer experience. She says it was the hardest thing she’s endured, but she wouldn’t trade the experience for anything, because God used the experience for good. All day today I was reminded how much we value our church family. This would be a hard experience without their support.

Shingles are itchy! I mean drive you crazy itchy. I woke up in the night and made some ice packs to at least let me sleep. Maggie was again my “Florence Nightingale” and rubbed Sensitive Sarna anti-itch lotion on my back. That’s good stuff – really eliminates the itch. I was able to do some work in the office at Lakeview Cottages. I then worked and putting the name decals on the new kayaks: the Cindy Lou and the Maggie Mae. I had a productive day and again was encouraged that I had energy by the end of the “off chemo” week. I’ve been managing the car rides up and down the mountains by sleeping through them.

Mark and Cindy were kind enough to give me a ride to Huntington Lake. George went up the day before and was working at Lakeview. I couldn’t believe how good I felt when we got to the lake (I did have a good nap earlier). George and I walked to the dam and back, then used a boat to haul a drifting tree away from our water front area. What a difference a week makes! I was so encouraged that I had the energy to get around!

Today was my grade-level planning day for school. My teaching partner is moving to first grade next year – I will miss working with her. We collected our curriculum calendars and made sure they were all up to date. It was good to be on campus, but it was hard to see the kids and not give hugs. Jess was frustrated with me for going to school at all because my resistance to germs is about zero. First thing Jennifer & I did was sanitize Kristen’s (far away from the kids) office and wipe down my laptop computer. We took a break for lunch where we got to meet the new 5th grade teacher, a transfer from another school. I’m sure we’ll make a great team. After lunch – nap time.

Today I was feeling pretty good and ran a bunch of errands. I met friends for lunch. I was describing my side-effects and mentioned the painful bumps on my back. Nurse Practitioner Jennifer immediately made a diagnosis – shingles. What do you know? I’ve never had that before. Apparently they’re contagious, too. Nobody can really explain the contagious part to me. I do know that when I went to the doctor, they suggested I sit in the hallway until my doctor could see me. So, bunches of pills later, I’m treating my shingles.

Quilting Margie took me to quilting – her first time. She was quite a gal at Jennifer’s big stitch quilt. I’m working on the quilt with vintage Dresden Plates. I’m not very fast, but I think my stitches are still ok. I noticed I was pooped out after about 45 minutes though. Must be all the excitement of busy ladies working and chatting and sharing good thoughts!Even though this is a week with out chemo, I had a doctor’s appointment. Nurse Debbie has committed to going to all doctor meetings with me. She takes notes and asks for clarification when my eyes glaze over. This is a huge gift she is giving me. Jess met us there. So here’s what Doc Garley says:MRI = kidneys are good, cortex of my bones (outside covering) is solid.I do have holes or pits (from the cancerous plasma cells) inside my bones. The holes caused my back pain. The holes cause changes in the anatomy or structure of my skeleton. I have no large chunks of bones out and no “impending” cracks. My body is not the same as it used to be! I do have small groups of myeloma cells which are called tumors, but these are very small.The plan continues to be to treat the myeloma with chemo, avoid radiation, then build up the bones. I asked about chromosome #13 and Doc Garley showed me pictures of my chromosomes. Yes, #13 is abnormal which indicates Multiple Myeloma, also irregular are nos 4 and 15. She says this means my Myeloma is harder to treat. We also talked about my IGA - the bad protein (plasma). She calls it a “spike” in the scan – on 5/11 it was 2306. Our goal is to get it below 378 with no abnormal cells.I know that learners have to hear something about 7 times in order to take it in and consider it learned. Today was a good day for hearing things again. Today’s doctor visit was more of a “state of the body” meeting. I took in a lot more. When I got home, I read through the information from the internet and the pieces came together more. I felt like I could take a little more ownership of what is going on inside my body.

More effects of chemo therapy are setting in: acne – not just for teenagers! Neuropathy – numbness in my feet and hands. For me, my feet feel cold all the time. Wednesday night I found a ring of bumps on my back. An ice pack on my back helped me sleep.

Tuesday, May 26, 2009

I had my first MRI today. I thought I might be claustrophobic, so my plan was to take a nap during the procedure. After I got all checked in, and the nurse said I was good to go, I took a few of my handy meds and settled in for an afternoon nap. Jessie’s shoulder was a great pillow while we were waiting. Then I finally got to meet the big machine. I laid down on the bed, asked for classical music, and took a nap. My friend, Sue G., recommended keeping my eyes shut so I don’t feel the closeness of the tube. That worked and the whole procedure was quite painless. Jess & I got drive-thru burgers and shakes on the way home. After lunch, I finished my nap. Mission accomplished!Many thanks to Karen & Max for dinner tonight - Minestrone soup with all the sides - yum! Max brought his home canned applesauce and it is HEAVENLY! I mean it, this applesauce is tops. Samples to anyone who shows up tomorrow!

The last few years at Huntington Lake (7,000 ft elev.) we’ve had snow, sleet and rain. Some work gets done, but mostly we hunker down in our cabins. This year, however, was beautiful! I mean everyone else sure missed out! The workers (not me) got so much done and the resort looks great! Our group had over 20 trout for Saturday dinner! Even the kids were catching their limits!It was a good time for me because my job was to rest. I’d visit with friends, then I’d snooze for a few hours under my down blanket. It was great to see friends and be bouyed by their love and concern. I ventured forth a bit on Sunday and Monday. I walked the length of the campus and checked out the water front. Mostly, I ate and slept. A good time was had by all!

Friday, May 22, 2009

and apparently adults undergoing chemo! When I woke up this morning I was pulling flecks of lint out of my mouth. I just want to say that I practice good dental hygiene, and I did brush my teeth last night. I went to the bathroom mirror and looked in…. oh my gosh – it looked like a flannel blanket in there! My tongue, gums, cheeks…well, you get the picture and it isn’t pretty. I made a frantic call to my chemo expert, Jennifer L., who confirmed that it does happen. After a massive brushing job I feel a little more human. My tongue is sensitive though, I guess that’s what that was all about. Also I have a sore throat and am on antibiotics – remember the long clinic visit yesterday – well worth it in retrospect.I did find pollen face filters – apparently the swine flu has caused the “oh, so attractive facial accessory” to be in short supply. Were headed to the mountains shortly.

Thursday, May 21, 2009

Oh! A funny thing happened at the “slow” clinic today. I told Maggie they have baskets of goodies to eat – wrapped cookies, crackers & cheese, chips, dried fruit… I really wanted some salty chips, so we sent Maggie on a mission to find the basket. We thought it would be in the “atrium” room. The basket in our room had socks in it – nice thought, but not very filling. So when Maggie returned with the food basket, eyes brightened up all around! She got to do the flight attendant thing with other guests (confined to their recliners and IV lines) around the room. She made several people happy. Pretty fun! That’s one of the reasons it’s so great to have a friend with you!

Today should have been my “fast track” chemo treatment through the clinic. No blood work, no doctor visit, pass to the front of the line! Maggie was my “escort” for this fast trip. The only hitch is that I have been having shortness of breath and a slight sore throat. I wanted to check it out with the nurse since we’d spend the weekend at Huntington. So goodbye fast track, hello end of the line!Everything was fine, just slow. I got some anti-biotic for my throat, which should help my breathing. Because I saw the nurse, they wanted to check my blood. As we were wrapping up, I noticed that my blood HGB was 11. On 5/11 it was 9.4 then 10.0 on 5/18. The nurse asked how that happened, because I hadn’t received any Procrit since the first treatment. I told her that I guess we’re killing off enough of the bad guys to let the good guys grow. I don’t know if that’s the truth, but it’s my story and I’m sticking to it!!!Please pray that I don’t get too much pollen at Huntington Lake and that I stay healthy. Thanks friends, I am truly lifted up by your prayers. I appreciate you so much. I am so happy to see the MacLeods checking in! I miss you guys!

Wednesday, May 20, 2009

I’m finding that the second day following chemo is my hardest day. Last week I slept through Wednesday. Today, I made it to quilting! I didn’t do too much work, but at least I got there! It was so great to see the ladies; it felt like a great big hug! I make it to quilting only about twice a year, but these ladies make me feel so loved and welcome.When I got home, I had the best potato soup ala Niece Tanya, and then took a nap. It was a long nap with weird dreams. And now I’m rambling, so it must be bedtime! What a life?

Tuesday was a productive day. I accessed my school e-mail and cleared a lot of business out of my in-box. I responded to several people and gave them my blog address. Boy, was I being efficient. That evening I realized I had given all those folks the wrong address. Bummer – Even when I think I have a clear mind – it isn’t! I did pre-register for my MRI which will happen Tuesday, May 26. The nurse who took the info over the phone said I am taking so many meds that they may decide not to sedate me for the procedure. As I’m a little nervous about the whole claustrophobia thing, I’d appreciate prayer regarding the MRI and that I will be calm.We finally checked our street mail box – it had been nearly a week. I was overwhelmed by the number of cards bringing greetings and well-wishes. Thank you everyone for those. Also delivered was a devotional dropped off by our Pastor, James. It’s called Praying Through CANCER, Set Your Heart Free from Fear. Here’s the cool part, it has an entry called “MRI: Mini Roll Insertion.” It directly addressed my MRI fears – how cool is that?Jessica gave me a shot of Demerol at bedtime. She did a great job, I didn’t feel a thing!

Monday, May 18, 2009

I had a lot to say today before I went and got all emotional on us. The doctor says I look good. We still have some concern about the pain I feel when I cough – sooooo… cough syrup with codeine and throat lozenges. I’m all set for the MRI a week from Wednesday. Debbie RN had the good sense to ask about my HGB: Last week was 9.4; this week is 10.0, the medical people seemed to think that was good. I’ll take it!The treatment went well, meaning I wasn’t wiped out. Cindy was a good friend – we talked some, she worked some, I dozed some, she found the snack basket for me! We sat in the “clinic.” We think it should be called “The Atrium”, because it has one and is very nice. We found one treatment room that we called “The Den” because it had a tv and two older guys hanging out in it (actually their IVs were hanging, yuk, yuk). We plan to work on this whole "theme room concept."At home I took a nap. Dinner arrived in style: Tomato Basil Bisque ala chef Nathan, Caesar Salad, rolled sandwiches and to top it all off (drum roll here) Banana Split Ice Cream from the carton. Thank you all. If food will make me healthy, I will have a clear bill of health in no time!

Today – good!!! I wake up several times in the morning. This morning – 3:00 take my thyroid medicine. I notice that my head feels a little clearer – this is good. I have a funny sore spot in my throat , so I make some weak tea. I write some thank you notes. This is a great thing to do because I get to think of the giver and the special gift all over again. I decide to take a nap. A nap at 4am? Well, I am on sort of an infantile schedule. Wake up again – get the paper, another cup of tea. Check out my feelings – still alert, some pain when I walk – evenly across my hips – what do you know?It’s warm outside, but overcast this morning. My sweet-peas are beginning to bite the dust (are you smarter than a 5th grader?) I pick some sweet peas and leave the bouquet on my porch for Cindy (Beware of allergic people who live here). Wow! Good morning world)Unexpectedly saw friends at the St. Agnes Oncology Clinic. They have positive things to say about their treatment. This is the part I love best, “Come on down to our house if you want to talk about things. I think I’ll take you up on that, I would love to talk about things… Like I wish I had supported you during your illness….And how welcome your parents made me feel when I was in college, and how your mom taught be to quilt and gave me her recipe for Mennonite peppernut cookies... I think I would like come on down and talk about things.OK I’m feeling a little sentimental here. I better take a break. God blesses us through the good people he puts in our lives.

Sunday, May 17, 2009

Saturday, the 2nd day after chemo, went better this time. Mom was more ready for it, and therefore willingly rested. She kept up on her fluids and when she got sick of bed/the bedroom, she moved to the living room couch. I put on the movie 21 which she had started B.C. and wanted to finish. In the afternoon she finally decided she was ready for some pain meds which I was able to inject for her by myself (under the supervision of Nurse Practitioner Jennifer.)Sunday (today) is the only third day after chemo she gets a week. She was able to make it to the first service at church and that made her really happy. I think its hard to be home for such a long chunk of time. I could understand going a little stir crazy!She rested, then visited with her teaching partner Jennifer L. and John (Jennifer's son). John helped me finish a book I was working on. Later today mom made it over to a family gathering Aunt Maggie was hosting. Cindy W. was thankfully available to bring mom over late and take her home early so it didn't wear her out too much! She's resting now and hopefully will be for the night. Tomorrow is a chemo day.PS-Prayer Support- Please pray that her coughing will subside. While it doesn't seem to be that noticeable to us, it hurts her a lot to have any little cough because it kind of jolts her body.

Friday, May 15, 2009

Friday is a good day. During a visit from NPT Jennifer, we figured that some coughing would be good to loosen up my chest. Some coughing would not warrant being knocked out. I did take a morning nap though. Do they allow those at school? I think I need two per day. What do you think, admin team at Pinedale, is that ok? This question may impact my ability to return to work, humph.

Dad & I had a nice breakfast together -oatmeal, raisins, brown sugar. I was trying to fill in the shopping list and discovered that I can't think of a darn thing! Now, what are those little round oat things (no, not puffs) that float and they're good for you...and moms like them....Cheerios! I wrote it down. We agreed that life these days was a lot like playing that game where you count the letters, but don't talk, and stretch it out, and pantomime and... what is that game??? No not scattergories, how about Charades! That's it! I may still be smarter than a 5th grader, but I'm definitely not speedier.

The Blodgetts brought by some beautiful blue hydrangeas in a pot. I watched more humming birds out the back glass door. Guess feeding them was a good idea! Watering the potted Hydrangeas was a good idea too. I can take care of these guys! If you feel you must send a potted plant: hydrangeas and violets are good! (silly me for asking - I'm becoming blunt - oh yeah, I already was that.)

Jennifer L., Kristen, Allison, & Hollie and Jessica are awesome! They entered my grades, graded my idiom books, and are entering my grades into my electronic gradebook. Even some students helped out! I am so relieved! They also already took care of my student assignments for next year. What a great group. Just goes to show that no one is really irreplaceable. Good people step in to help. I think of a study at church I took - David & Jonathon. The point was: God wants us to have close friends who will do anything for each other. I am finding that my friends are willing to do anything for me (Debbie F. RN said she was willing to give me the pain medication as a suppository, but I opted for a pill under the toungue.) I am learning what it is like to accept (help, food, advice, gifts, time, etc) from others and still figuring how to be gracious. The act of give and take heaps blessings on both sides!Thank you for your on going prayers. If I wasn't sick, this would be fun. But then we'd all be working too hard and wouldn'd be getting our paying jobs done. OK, everybody! It's nap time, go take a nap!PS - Prayer Support - Please pray that Saturday (the second day, goes better than the last "second day." We're trying to figure out my pattern. Thanks!

Since my mom was diagnosed we have heard a lot of the question: "Is there anything I can do?" and we have had a lot of great assistance with meals, and getting my mom to and from appointments, even getting perscription. This has been a great blessing, but we have also at times had more food than we could handle. As suggested by the book How Can I Help?: Everyday Ways to Help Loved Ones Live With CancerI created a calendar at Lotsa Helping Hands. The website allows me to invite people by email and they can, in turn access the calendar, view any form of need whether it is shoping for a simple item, or getting Mom to an appointment. I have added several itemsallready and if this seems like it will work, let me know and I will continue to use it. To be added to the Lotsa Helping Hands community I created, email me ( Jhrme@comcast.net ) and I'll send you an invitation. My computer is on the fritz so I don't have all my email addresses at the moment.

*Update: Mom was pretty with it this morning. She kind had so congestion and it hurts her when she coughs. She says she primarily experiences pain when she coughs. She doesn't like seeming so out of the loop when she is medicated, and is having a hard time "letting go of school." She really wants to be there. We had a good visit with Grandpa and he left this morning. It was good to have food to share while "entertaining." Dotty brougt over a "Guest book" quilt. If you happen to be stopping by, be sure to sign it with the pens on the quilt. She may not remember to ask you but it will be good for her to have.

Thursday, May 14, 2009

Home from Chemo. This was Jess's first time with me and meeting my doctor. Feeling better. Still very sleepy. Had a fun visit from Holly and Allison. Debbie was my consistant note taker. Still small apppetite. Enjoying popcicles, and diluted cranberry juice! Contemplating soup. The pain meds are working successfully.

Wednesday, May 13, 2009

Today was more of a rough day. She was pretty loopy. More chemo tomorrow (Thurs.) Please pray for her pain to go away, that chemo goes well, and for my grandfather's safe travels (he's driving down tomorrow)! We are very grateful for Jennifer's pain med injecting abilities! This one is short because I have a presentation tomorrow morning. More details to come!

Tuesday, May 12, 2009

Taking off Tuesday and Wednesday was the right thing to do. I needed today to “take inventory” of what’s going on and see how I’m feeling. I wanted to eat right and get organized. While I was eating at the kitchen table, I noticed several humming birds check out the feeder. The feeder has been empty since January. I took a bold step forward, cleaned it out and re-filled it! I answered some phone calls, cleaned half a window, and sent out a greeting card (my goal). All in all, a pretty normal day except that I stayed in my pajamas until after my 1:30 nap! I had my hair cut by Becky. Isn’t it amazing the way hairdressers become such close friends? She has her own health issues – we know so much about each other that we just talked non–stop! After getting back home I had a visit from Deb B. who is just finishing up her treatment for breast cancer. We compared notes, but mostly we talked abut the lessons we’ve learned and the many blessings we have because we are members of a great church with a super church family.Again, I have to say that the contact I have with people help me be positive. I confess that in personality tests I usually stand out as an introvert. I’d rather read than get on the phone, I’m not really good at hugs and saying “I love you.” (Please be gentle with my true confessions here.) This may be the lesson God is teacher me: Get over it with the introvert thing! I need my friends. I can’t tell you how good the endorphins are for my well being. The pain and trouble just about disappear when I hear from my friends and family. Whether it’s a phone call, text message, blog comment I feel so blessed. The sweetest words are, “I’m praying for you and your family.” Thanks – I love you!

Monday, May 11, 2009

Monday, May 11 First Chemo treatment. George dropped me off. Deb met me as my designated nurse, scribe, and friend. The pain in my back was the most severe to date - I felt lousy. We waited for the doctor in an exam room - Deb dimmed the lights and tucked my blanket around me. I felt so crummy that I called in to school to take Tuesday and Wednesday off, too. When the doctor arrived she answered all my questions. She says I'm probably at stage 3 (I don't really know what that means, but somebody asked me). My kidneys are in good shape, by heart is good. I don't need more blood transfusions; they will give me procrit to increase blood production.So, I had Demerol in my iv drip - that was good, but I couldn't do anything that required thinking, so I rested. Deb went to get lunch and pick up my medications at the pharmacy (She was super!) Pretty soon Patti, Laurel, & Jennifer from work marched in. So I'm in a room with about 12 other patients and these friends bring this HUGE basket of goodies and a Huge bag with Lena's green afghan. I wonder if the regulars could tell who the new patient was? Having these three live-wires (and the Demerol) made me feel much better. They brought me out of my funk, and I really started to feel much better.The good things that happened today: Deb was my "personal assistant." My Pinedale colleagues are the best! Lena knit me a really big green afghan that will stretch and wrap all around me. I love the gift basket ( cursive book, word search, saltines, magazines (wide variety: quilting –Cosmo) and so much more, Dinner from Anna & Patti, Phone calls, so many friends offering up prayers. I feel very well taken care of. I am truly blessed!

Sunday, May 10, 2009

This winter, I found that my colds were lasting longer, coughs were lasting longer, and when I coughed, I had a sharp pain in my lower back. A few weeks following the last cold, I developed a persistant pain in my hips and lower back. I thought it was nerve problems, I visited my favorite massage therapist (Annie), I stretched, I exercised to no avail. Finally I had my annual exam on April 28, they took blood and my cholestoral was abnormally low. My doctor called me personally that night. (Note to friends: When your doctor calls you in person, at night, it's not usually good. Especially if she's getting you in to see a Hemotology Oncology Specialist immediately.)The appointment was at 8:30AM Thursday 4/30, we talked, THEN she wanted a bone marrow biopsy. After calling people to pick me up, we next headed to St. Agnes Hospital for a blood transfusion (I was only 1/2 full.) I got home after seven o'clock PM.

Monday May 4: X-rays of all my bones

Thursday May 7:I had a follow up appointment 1:00 PM .11:00 am that day the doctor (herself) calls to find out if I would like to come in a little earlier.(Note to friends: another personal phone call from the doctor.) I declined because I was headed to lunch with my girlfriends and that was IMPORTANT!After lunch I met George and we went in for my appointment.The doctor told me that I have Multiple Myeloma and filled me in with about as much as I could handle that day. George was very good at taking notes and asking all the right questions for me.She did tell me that I will be having IV chemotherapy treatments on Mondays and Thursdays for two weeks and then one week off. This cycle will repeat 3 more times and then we'll see.

More updates to come after the first round of chemo tomorrow, and a full nights sleep. The updates will be coming from either myself or my daughter Jessica.

April 30. 2009 I was diagnosed with Multiple Myeloma. This blog is to keep my friends and family updated. If you have comments, advice or even questions feel free to comment! Comments have been enabled even for people who aren’t BlogSpot members. Just choose the anonymous option!